Navigating Privacy, Stigma Concerns in At-Risk HIV Populations

In order to end the HIV epidemic, payers and providers must work to improve uptake of pre-exposure prophylaxis (PrEP) among at-risk patient populations. In this interview, Edmund Pezalla, MD, MPH, CEO, Enlightenment Bioconsult, LLC, shares his thoughts on the challenges involved with caring for this patient population as a provider and covering preventive HIV care as a payer.

With a background in public health and health policy, Dr Pezalla is currently a consultant on payer strategy and market access for pharmaceutical and biotech firms.

Dr Pezalla previously served as vice president for pharmaceutical policy and strategy at Aetna, where he worked on drug evaluations, pharmacoeconomics, and public policy related to drugs and devices approved by the US Food & Drug Administration.

Prior to his work with Aetna, Dr Pezalla was with Prescription Solutions, the pharmacy benefit management arm of Pacific Care, which was purchased by United in 2006 and became OptumRx. He is now the CEO and founder of Enlightenment Bioconsult, LLC.

What are some of the common challenges with engaging at risk HIV patient populations?

Honestly, one of the most important challenges is being discreet and sensitive to the patients. Those people who are at risk do not want to be called out in public. They may not want to discuss their activities and their life with their family or other people. We need to be discreet and recognize their need for privacy.

There is certainly a difficulty in identifying the people who are at risk in a population sense if you want to connect with those people. For a couple of reasons, one being that not everyone who is at risk recognizes that they fit the category of risk. They may think of PrEP as being for only people who have certain gender identities or lifestyle identities, and that may not be the case. It has more to do with your activities and level of exposure to HIV. It can be very difficult because not everyone really who is at risk really understands that they personally are at risk.

The messages that we try to give in a public campaign or a semiprivate campaign in different locations may miss those people. We need to be clear who it is that really should receive PrEP and trying to reach those people in a culturally appropriate and sensitive way and also being sure that we recognize not only their need for privacy, but also because privacy is governed by federal and state legislation, for example, HIPAA.

What can providers do to improve patient uptake of PrEP?

Providers have a key role because patients trust their providers, and we have seen that in many other issues of public health issues of the day. People really want to hear from someone who specifically knows their situation and can speak to it.

There are a few things that physicians can do to improve this situation. First off, they really should know something about the lives and the sexual preferences of the people that they care for. It should be part of a broader evaluation of your patients and questions can be asked discreetly to maintain a patients privacy and comfort levels. For example, they can be on a questionnaire. Then, the physician reviews the questionnaire and the answers.

There are many important factors including family history that physicians need to take in, not necessarily reflecting sexual activity, but a questionnaire is a good time to ask people explicitly about sexual activity with an emphasis that this is kept private and can help to improve the specificity of the health care being offered them.

A discussion about HIV and PrEP should occur if a patient is being treated for a sexually transmitted disease (STD) or a suspected STD. This is a good time to bring it up, when it is relevant otherwise, it’s a missed opportunity. We as physicians cannot miss any more opportunities if we are going to make a difference.

The key is to have some information available. Know, for example, that PrEP is over 99% effective if people take it every day. Knowing a little bit about who should take PrEP, how it works, and how effective it is can be extremely helpful, because that gives confidence that the physician is speaking to the patient’s own issues and that the patient realizes that there is high quality data backing the use of PrEP. PrEP has been used now for many years and we have solid data.

Also, physicians should listen. They need to listen to patients and when patients are talking to them about their life situation.

For example, a lot of people, if they realize that you are listening and you care while discussing things like the difficulty they may have using condoms or the difficulty they have in getting their partner to use condoms—these are important factors, because if your partner doesn’t use condoms and you are concerned about getting infected, PrEP can be an important activity for you personally.

Physicians can ask. They can listen. They should know something about their patients, and they should know something about PrEP and when to talk about it and what to talk about.

What can payers be doing to better reach their members about PrEP access and education?

That’s a great question because payers have to be careful here. A payer cannot target a patient for PrEP in the same way that we can send a letter to a patient and say, “We would really like to enroll you in our diabetes program.” You cannot send a letter to a patient say, “We would like to enroll you in our PrEP program.”

As much as we think that might help patients, you run the risk of making patients uncomfortable about being identified. Also, there’s definitely privacy concerns here. If that letter or other communication falls into the wrong hands, someone else in the family opens it by accident when an individual has kept their lifestyle private, you run the risk of exposing a sensitive topic for patients to others.

Health plans need to be more careful and unfortunately cannot be as specific as providers. They should provide information on their website. They should provide information on general materials. Everybody has to get a big stack of medicine materials about what medicines are covered and how your health plan works and who to call and who’s in the network and how do you know.

These documents have a myriad of information. Making sure that these documents also mentioned PrEP as one of the treatments that’s covered, especially because for many health plans now it’s covered at very low or no copay because of the nature of the recommendation as a preventive therapy, those are things that can be brought forward, so that patients know about it. If they self identify themselves as being at risk or think they might be, they can go talk to their doctor about it. Health plans need to provide guidance in a general way on their website as somewhat more specific way in their plan documentation.

Health plans cannot reach out to doctors in their network and ask for a list of possible at-risk patients for HIV. For one thing, how would you know? There’s no code for at risk for HIV.

We are not talking about saying, “Oh, these are specific patients you need to look for,” but pointing out to physicians that PrEP is covered. What a physician needs to do to have a patient receive the appropriate medication and how the patient can get the appropriate testing—that’s part of the CDC guidance on how to use PrEP and encourage physicians to speak to patients about their sexual preferences, their activities.

When patients are putting themselves at risk, physicians can help them with strategies like PrEP or use of condoms and other barriers to reduce or minimize those risks for that patient. The physician is an important link to the patient both in terms of public health and the care of the patient when they go to see the physician but also for the payer as well.

Is there anything that I have not asked you about or anything that you would like to add?

I would like to point out the PrEP is highly effective. It is an important time for us to be able to have these conversations. Conversations for individual patients should be in private between the patient and their provider and sometimes between the patient and their partners.

We should all be upfront with our partners about our HIV and other status, because we should care about those people and we should be able to want them to take less risk. Do not keep your HIV status a secret from people who ought to know, because there are preventive measures they can take to decrease their risk and especially if these are people that you live with.

I really encourage patients and health care providers to have these discussions and certainly payers can support this by making it clear that PrEP is covered, how prep is covered, and how to manage to the guidelines in terms of ordering the appropriate monitoring tests. Thank you.